What is PAH?
Pulmonary Arterial Hypertension (PAH) is a disease in which the arteries of the lung develop elevated pressure. As a result of this, the heart has to work harder to pump blood through the lungs. Over time, the right side of the heart can weaken or fail.

What is the PAH Biobank?
The National Biological Sample and Data Repository for Pulmonary Arterial Hypertension (PAH) aka the “PAH Biobank” is a NIH/NHLBI funded resource of biological samples, genetic data, and clinical data for the PAH research community. WHO Group 1 PAH patients meeting inclusion criteria may be enrolled in the biobank. Our goal is to create a resource of biological samples, genetic data, and clinical data that can be used by PAH researchers to better understand mechanisms of disease and further treatment.

Where is the PAH Biobank?
The PAH Biobank is maintained at Cincinnati Children’s Hospital Medical Center in the laboratory of Dr. William Nichols. All samples are processed in house and stored in secured refrigerators, -20 °C, -80 °C, or liquid nitrogen freezers. A portion of the samples are stored off-site with the Cincinnati Biobank at a secured facility to adhere with Biobanking best practices.

Where does the clinical data come from for the PAH Biobank?
Enrolling Centers for the PAH Biobank are directed by physicians who treat patients for PAH and have the medical records for participants readily available. The Enrolling Centers complete an electronic case report form (eCRF) with the applicable clinical data for each consented participant with information from their medical records.

How is patient data kept confidential at the PAH Biobank?
Each participant is given a numerical research subject ID, and no Personal Health Information (PHI) is received or kept by the PAH Biobank for participants enrolled in institutions outside of Cincinnati Children’s. All samples and data for a participant are only known by the research subject ID at the PAH Biobank.